7-year-old with Rare Disease Travels to D.C. to Meet with Congress

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DALLAS — Emmy Kaighan was a regular three-year-old girl, until she woke up one morning and could no longer walk or talk.

“Basically the healthy tissue in her brain was being attacked by this syndrome called ADEM,” her father Mike Kaighan said.

Emmy was diagnosed with a rare disease called Acute Disseminated Encephalomyelitis, or ADEM. It’s a hard disease to pronounce, let alone treat. Emmy spent a month in a medically-induced coma at Children’s Medical Center.

“I had to sit in this hospital room, and they fixed all the problems that were going on in my brain,” she said.

Emmy was lucky; her folks have private insurance and live near a major medical center. But being stuck in a hospital isn’t easy, especially if you’re a little kid.

“I got to play Bingo,” she said.

“We want other families to be able to play Bingo with all of the kids,” Mike said tearfully.

Emmy and her dad are heading off to D.C. this week, to talk to members of Congress about making it easier for kids on Medicaid to get the same kind of treatment Emmy received.

“Without that someone who lives in an outlying area or who doesn’t have the ability to receive that kind of care,” Mike said.

“You know the outcome may not be the same.”

Good lucky, Emmy! The folks in Washington can use all the help they can get when it comes to health care.